Stopping Diltiazem

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Stopping Diltiazem

Postby Luka » 22 Apr 2013, 16:27

I’ve been on Diltiazem for about 14 weeks now (twice a day), but still get mild to moderate pain that comes and goes. Some days are worse than others, while other days I feel just fine (with very little pain). It feels more like burning and stinging where the fissure is on my worst days. I honestly don’t know how much it’s helped me since some days it seems like it makes it worse (it stings pretty bad sometimes when I put it on, but then eases up). It does seem to relax the area a little bit, but I’m ready to stop using it. I’m just afraid the horrible pain will come back from when I first got a fissure if I stop taking it.
How have other people who’ve taken Diltiazem fared after stopping it? Did the intense pain come back? I just don’t want to take it anymore because I fear the longer I take it, the more I increase my risk for developing an allergic reaction to it like many have on here. I definitely don’t want that to happen, but I don’t want the horrible pain to come back, either.
Other than the Diltiazem, I’ve been doing everything I can to help the fissure heal (very healthy diet, eating less, no straining, lots of water each day, light exercise like walking, trying to relax, etc.), yet I still get pain (not horrible, but enough to bother me... probably a 3-5 on a scale of 1-10). I don’t know what else I can do other than give it more time. I’m honestly at a loss. : ( I don’t have the money to see a CRS again (no health insurance), so I guess all I can do is suffer with it and hope it goes away eventually. I’m guessing the next step is surgery, but it scares me so much and I can’t possibility afford it right now. I worry that I will come out of surgery much worse than I am now and that's taking a huge chance.
Sorry everyone. I guess I’m just a little depressed today. I don’t know how much more I can take of this.
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Stopping Diltiazem

Postby JHH » 23 Apr 2013, 09:15

Im pretty much where you are. Been on nitro/dilt for more than 9 weeks, and like you I still have pain about 3/10. Im pretty much convinced creme will not heal us.
I wouldnt worry much about stopping diltiazem. Im pretty sure the intense pain was caused by the fissure being fresh. Why not stop and then if pain gets unbearable, just restart.
In 3 weeks I will have Botox, and then Im going to dump the ointments. I never had instant relief from them anyway.
- Fissure developed in Jan '13
- Started rectogesic in Feb '13 and diltiazem Apr '13.
- Got botox Jun '13
- Healed by Okt '13, although I still had some irritation for about a year.
- New fissure April '22, healed June 2022
- New fissure 24. December 2023
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Re: Stopping Diltiazem

Postby Luka » 23 Apr 2013, 14:12

Yeah, JHH, I know what you mean. I know the ointments help a lot of people, but I really haven't gotten a ton of relief from the Diltiazem. Maybe I should try Nitro? I heard it's more powerful than Diltiazem. I don't think my CRS prescribes it, though, since the side effects can be awful. He personally told me that they don't use Nitro anymore because it causes bad headaches in most people.
I've heard a lot of mixed opinions on Botox. It's also pretty expensive (about as much as surgery, from what I've heard). I think I'd rather just get the LIS than take my chances with the Botox, but that's just me. You have to get put under for Botox, so I might as well just get the LIS if it comes down to that.
Let us know how the Botox works out for you. I hope you find relief very soon.
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Stopping Diltiazem

Postby Ever the Optimist » 23 Apr 2013, 14:53

Hi Luka,
Unfortunately, you won't know exactly how effective the Diltiazem cream's been until you actually stop using it. After long-term use, it can cause some of the stinging that you describe and it's also associated with it's own "itch"! I fully appreciate your fears of stopping the treatment too as I was really nervous after 7 weeks of using it, thinking "Am I going to go back to all that horrible raw acute pain again?" but I didn't.....I didn't go back to being normal either immediately but it gave me instant pain relief from Day One and when I stopped using it, I was no longer in that state of sheer knife-like agony. It was more of a twinge thing I was dealing with. I really believe if you stop the cream and your pain levels are nowhere near as bad as they were, then the cream has done what it's meant to and has helped to start your fissure heal. If you continue with all the other great stuff you've been doing, then over the forthcoming weeks, maybe months, you will start to go through different healing stages to a point where your fissure will heal or almost (that's where I am right now 1 year & 5 months on) Every month it just got better and better - but it is a very gradual and very slow process, and patience and positivity is key in recovery. I think it's about 2 years until the anal area can pretty much get back to the way it used to be and even then, I would continue good life-long toilet & diet habits. Try not to worry too much about it and just take each day as it comes. If when you stop the cream, your pain levels have dropped, then try to think of it as "Wow - This is nowhere near as bad as when I started using the cream. I believe it has helped and I am now healing!".....There's always going to be good and bad days through the whole recovery....
Try not to get too worried by it all and just see how it goes...Hoping very much that it has helped you but if it hasn't and nothing really has changed at all, then that's the time to start considering other options.
Sorry to hear you are so down again - it's all so mentally overwhelming but try to trust in your body and trust that you will heal and you will get through this.
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Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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Re: Stopping Diltiazem

Postby Luka » 23 Apr 2013, 23:17

Hi Ever the Optimist,
Thank you for the positive thoughts. : ) I've just been so afraid to stop the Diltiazem for fear of getting that horrible pain again. But from what you've said, I think I will be safe to stop it. I will definitely stop using it this week and see how things go. I just think it's really time to stop since I've been using it long enough and I don't think using it any longer will help. I've had a really rough week and the stress isn't helping things. Everything seems so much worse when I'm really stressed out.
1 year and 5 months is a long time. I'm happy to hear you're better and healing, though. It's been almost 4 months for me now. There's been improvement, but it's soooooooo slow. : ( My patience is wearing thin. Some days there's mild to moderate pain and other days there's not and I feel fine. It's really weird.
Did you ever try Botox? I can't remember if you mentioned it before.
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Stopping Diltiazem

Postby Ever the Optimist » 24 Apr 2013, 15:07

Hi Luka,
No - but I was prepared for it!
After the diagnosis of the fissure, I was given Diltiazem (which as you know helped immensely....)
After my second EUA, which was largely to deal with a fistula, I was advised that if the fissure was really bad, they would try Botox. For some reason, probably because the fistula detracted from the fissure, they didn't do anything and told me that they couldn't even see the fissure anymore, so it wasn't necessary after all.
It's still a bit of a mystery actually because after my third EUA of the year, the fissure mysteriously re-appeared! but I was advised that although it was chronic, it was almost healed. x
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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Re: Stopping Diltiazem

Postby Guest » 25 Apr 2013, 13:14

Hang in there Luka, you can beat this. It may be winning the battle but you will win the war.
Rhetorically I was wondering how are your stools nowadays? Do you still prelub before each BM. Do you head strait for the tub or sitz. In your exercising, are they strategically timed soon after a meal?
I have never had the long term spasm that it appears you are having and my heart goes out to you for your bravery.
I would just try to keep doing what your doing and maybe just try and mix up a few of your routines to see if that helps a bit.
Perservere Luka
Theres a cream, routine, food combo, exercise regime, stress relaxing technique, water balance, Dr. advice or procedure just waiting to crush your fissures......so please do not lose hope.
Keep serching, hoping, looking, trusting that one day your fire down there will be extinguished.
Were pulling for you.....Stay strong
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GL HTH
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Re: Stopping Diltiazem

Postby owmybum » 25 Apr 2013, 14:14

Luka,
You could always try stopping it gradually. Say a week of every other day, then a week of every third day... Then just see how you get on.
I too didn't want to give my diltiazem up, but unfortunatly for me I developed the itch, and had to go cold turkey.
I re tore shortly after, mainly due to stress and a lazy attitude to my diet!! Lol
I think if you carry on doing everything you are doing, you will be just fine going diltiazem free.
OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: Stopping Diltiazem

Postby Luka » 25 Apr 2013, 17:45

Ever the Optimist – Is a EUA an exam under anesthesia? Is that under general anesthesia or twilight sleep? I know some people have said they’ve gotten those to fully examine the fissure and, if warranted, got LIS at the same time. My CRS couldn’t even exam me because I was in a lot of pain at the time and was very tight there (probably due to nerves… I was extremely nervous to have someone looking at my butt!). Even though the pain is less now, I don’t know if I’d want to have a full exam there with an anuscope while awake. Those things scare me! But a EUA is something to think about in the future.
buttastic – Thanks for the positive thoughts. : ) My stools are still soft with my modified diet and lots of water. I don’t take stool softeners. I don’t take sitz baths, either. I never found them very helpful and sometimes they made me feel worse afterward (I have no clue why). Maybe the water was too hot? I just stick to warm showers. Plus, I don’t have a tub in my bathroom (only a shower stall), so it’s a bit hard to take baths all the time unless I want to use my mom’s bath tub.
owmybum – That’s something I’ve been considering. I might try to stop it gradually this week instead of cold turkey. Maybe I’ll just use it once a day for a week or so and gradually stop. I’ll see how it goes. Thanks for the advice! : )
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Luka
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Re: Stopping Diltiazem

Postby Ever the Optimist » 26 Apr 2013, 11:54

Hi Luka,
Yes an EUA is an Examination Under a general Anaesthetic. You are literally knocked out cold and the CRS can get into your bottom to have a thorough look around causing you no additional pain or distress. You wake up and it's over and you have a diagnosis. Initially, you can feel great because the anaesthetic is still kicking in - I've always had a local injected into the area too and once that wears off, you can feel a little uncomfortable, simply because they've been prodding and poking around a bit, but no worse than before.
Sometimes an EUA is done just to investigate if nothing is seen in an internal (or if you are in too much pain to even cope with an internal examination)......If the fissure has already been diagnosed, the EUA will be done so they can actually treat the issue. In some cases, people go for the EUA not knowing what they have and a CRS will treat the issue there and then. In my case, they performed the EUA initially to discover the cause of the pain and then acted accordingly afterwards. I would always just ask before what actions they are planning to take and if you don't want any "treatment" at that stage, then advise them of that -although they will normally advise you of what they will do beforehand once they make their diagnosis.
It's done as an outpatient appointment generally, so once you're awake, they keep you in for a couple of hours to check you are OK and then send you home!......
Do you have a detachable shower head? If so, do you aim the water directly and gently into the anal area? For me, a gentle warm showering in that area is really relieving but I must admit, a hot bath is best to just soak the area......
OMB's suggestion of gradually stopping the cream is also a great one. Mentally, it is a great help to know you are still getting some help with the cream.....
See how you go and good luck with it all ! :)
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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